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Jolene Norton Neufeld with daughter, Heidi and husband, Dustin
By MYRON LOVE
Jolene Norton Neufeldt needs your help!
The eldest granddaughter of Evelyn and the late Dr. David Pearlman – who many readers of certain age will undoubtedly remember – is in need of a liver and double lung transplant which requires her and her family to move to Toronto for at least a year or more. As we all know, Toronto, even under the best of circumstances is an expensive place to live. To help pay the bills while Jolene and her family are waiting in Toronto for the transplant, she has created a GoFundMe page( http://gf.me/u/rxua63).

 

 


The chef and Red River College educator first became ill three years ago, shortly after the birth of her first child, Heidi.
“I started to notice something was different about my voice,” she recalls. “Then I started to have difficulty swallowing and decided it was time to see an ENT specialist.” The original diagnosis was a paralyzed vocal chord on the left side. A follow-up CT also revealed a condition known as “Pulmonary Hypertension”.
“This was a devastating diagnosis,” Jolene points out. “There is no cure for this rare and progressive disease. The prognosis is usually not very good. An echocardiogram was ordered. In July (2016), she returned to work – although, she says, she wasn’t feeling the best.


Come October, she still hadn’t received the appointment for the echocardiogram and she began experiencing shortness of breath. “It was becoming difficult to even put on my own shoes,” she says. “At the end of October I was at work and became so short of breath that I had to go to the emergency. They ordered another echocardiogram and referred me to a specialist but discharged me saying there wasn’t much they could do for me there at that time.” A few weeks later , she was back to the emergency. This time she was admitted and was hospitalized for two weeks. “I underwent diagnostic testing almost every day that I was there. Finally I had a diagnosis. They found Primary Biliary Cholangitis (PBC) in my liver as well as autoimmune hepatitis and they confirmed the pulmonary hypertension as well as other issues stemmed from the PBC. There is no way to know what caused what but the doctors think that the liver disease is the root cause of all the other issues and that they were perhaps exacerbated by my pregnancy. I was prescribed medicines that would help with all of the various issues and, even though I started to feel a bit better, I had to stop working.” After the diagnosis, she was quickly referred to a liver specialist as well as a respirologist. Very soon after that the liver specialist referred her to a liver transplant specialist to see if it would be an option for me.


“The transplant would cure the liver disease and there was a small chance that the pulmonary hypertension would get better because of that,” she says. “I began the workup for transplantation. This included a few trips to Toronto where the transplant would take place (only transportation to and from Toronto is covered by Manitoba health).” Although Jolene’s condition stabilized for almost two years, she barely left the house during that time. “I kept myself busy with my daughter and cooking,” she says. “Going out would take a big toll on me and I usually needed at least 2 days to recover. This was all very difficult for me as I had been a very active person and loved working and the outdoors.”
At the end of November, she got the call. A liver was waiting for her in Toronto. She immediately flew to Toronto via air ambulance to Toronto with her mother, Barbara, along for support.


And then, crushing disappointment.
Jolene also now had a problem with her heart. In January, she was scheduled for a right heart catheter test and it showed that indeed the situation had deteriorated.
“My specialist decided that we should wait a few months and repeat the test with no changes to my medicine,” she says. “In February I started to feel worse. At first I attributed it to having a cold but after about 3 weeks of decline I went back to the emergency.”
Currently, Jolene remains in hospital here. “Since being admitted I have been put on a continuous drip drug that can not be stopped,” she explains. “ I have had a permanent central line put into my chest and will be able to go home after learning to use a small pump that will continuously inject the medicine straight to my heart. This drug will help me to have a better quality of life for at most a few years depending on how the disease progresses. “Now my only chance to live is to have a double lung and liver transplant in Toronto. They have started the application process and hopefully I will be approved. In order to get the transplants I will have to move to Toronto with a full time support person – my husband, Dustin. Once I am officially listed, I have to live in Toronto for up to nine months while I wait for a donor and then remain in Toronto for an additional three months for recovery. “Accommodations are not covered in any way. We will be responsible for all moving costs and living costs during the time we are in Toronto, all the while still being responsible for our home, bills and responsibilities here in Manitoba while possibly being gone for over a year.
“The cherry on top is that I have a rare blood type which makes finding a donor match even harder.”
Despite the long odds, Jolene remains positive and optimistic.
As of last Thursday, Jolene’s GoFundMe efforts had raised over $18,000 from 165 donors – in just five days. Please consider helping her with a donation ( http://gf.me/u/rxua63).

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